3 families talk about living with autism

Garret Hoff and his mother, Dayna Hoff. Dayna, executive director of Autism Tree Project Foundation started her foundation in large part because of Garret, a 14-year-old with high-functioning autism.
— John Gastaldo

Garret Hoff and his mother, Dayna Hoff. Dayna, executive director of Autism Tree Project Foundation started her foundation in large part because of Garret, a 14-year-old with high-functioning autism.
— John Gastaldo

"But she's part of our family, and she's grown up with a lot of love," Leivas-Howard said. "We deal with it together. Her sisters understand; my husband and I are on the same team about it."

The parents have their own hobbies; she likes to write and he likes to ride his mountain bike. One of them remains with Marissa while the other takes time off.

Marissa obeys orders, but they often have to be repeated, especially if she doesn't want to do them. The orders must be simple and given in a familiar context, Leivas-Howard said.

"If I say, I need you to go into the room and get your shoes, she won't understand. But if I grab my car keys and I say, get your shoes, then she'll understand. I think if she sees me getting my keys, she knows we're going to go somewhere, and in that context what I'm asking makes sense to her."

Marissa Howard, now 10, poses with her sisters as a toddler at right in this undated photo. Her mom Irene Leivas-Howard noticed her autistic symptoms even at a very young age, like her inability to make eye contact with the photographer, off camera in this photo.

Marissa Howard, now 10, poses with her sisters as a toddler at right in this undated photo. Her mom Irene Leivas-Howard noticed her autistic symptoms even at a very young age, like her inability to make eye contact with the photographer, off camera in this photo.

But when Marissa wants to do something, she can be a lot more clever, sometimes to her family's distress. When the family was staying at a hotel four years ago, Marissa figured out how to open the gate to the hotel pool.

"She was walking into the pool, and she didn't know how to swim at that time," Leivas-Howard said. "It's little things like that you have to be careful of."

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Steven Frischling of New London, Conn., is raising Simon, his 7-year-old son with autism. The boy’s emotions can turn violent in an instant, especially if he’s thwarted. He’s got a great throwing arm, which he may exercise nonstop for hours if he’s angry.

“He is a delightful kid; he loves to gives hugs, he loves to give kisses,” Frischling said. “On the other hand, he often has no idea what he’s saying and doing.”

Simon is also a fanatic about cooking, both as a viewer of TV shows on the subject and in the kitchen, preparing meals with the utmost concentration.

Frischling said warning signs appeared in Simon’s behavior before he was 3. But there was no specific diagnosis at first. “The best answer they could possibly give us was, some things were off,” Frischling said. “And I’ve got two other kids to gauge this by.”

Today, he still struggles to find words for that difference.

“It’s hard to explain to somebody until they’ve actually seen it to understand what’s unusual about it,” Frischling said. “One of our neighbors summed it up best: He looks completely normal, until he isn’t.”

Simon also shows signs of Tourette syndrome and obsessive-compulsive disorder, but his health care providers haven’t made those diagnoses. The town’s autism program is well-funded, Frischling said, and that may be an issue.

“They’re hesitant to change his diagnosis because it may affect the service that he gets,” Frischling said, adding that autism services are relatively well-funded by government and private groups.

Dealing with autism is hard enough. Frischling said it’s even harder to take the reactions of strangers who lecture him on how to handle Simon when the child is having a meltdown in public. Hardest for Frischling, though, is when his son gets bullied.

“I have seen people who are 13, 14 push Simon,” Frischling said. “I have seen people make comments about Simon, adults, and I watched his brother walk up, get in their face and educate them on who his brother is. I can’t do that, but if a 9-year-old does, it gets their attention.”

For all the awareness about autism in the media, Frischling said, there doesn’t seem to be enough awareness and sensitivity among the public.